there's no going back. this is the new normal.

Health

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

Update March 2015: Strange twist... I finally saw my (old) immunologist who I trust very much, and without getting into all the details, it turns out that the "allergist" who did the test that led to my supposedly being glycerin sensitive wasn't actually a certified allergist at all. The test that was done was not standard and the reaction was simple skin irritation (not an allergic response). After about 10 months of avoidance, I've started using glycerin-containing products again with no problems.

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Delving into the waaaaaay obscure health topics here folks, this probably won't interest most of you. But some of my most obscure and specific health posts are the most viewed ones on here by a long shot, so I know that people are looking for this info. I wished so much that I had access to a post like this, so I spent some time writing it up for whoever is next to be in this sticky situation.

A while back, I attempted to get some allergy testing done, and came out of it not even having had the tests done, and instead labeled with a glycerin sensitivity. I'm going to save all the sordid details of this, maybe for some other time (I still have to go through some further investigations to figure out what's going on), but the long and short of it is that since then I've had to remove glycerin containing products from my life as much as possible. (The only things I haven't found replacements for and am still using are quite ironically my antihistamine pills, Reactine, and cortisone cream. There is a "Cortate ointment" petroleum based alternative, but I don't find it works as well.)

You would not believe how many personal care products, soaps, and medications have glycerin in them, it's RIDICULOUS. Not exagerating, probably 99% or more. It's safe to say I have been slathering myself in copious amounts of glycerin for most of my life - which is hopefully a good sign that my sensitivity isn't terribly severe, but it may have been impacting the overall burden on my body. It's extremely hard to find products that don't have it, and it's not only inconvenient but incredibly expensive, suddenly having to replace everything you own with more obscure and pricier products.

Health is not binary. People who are chronically and/or mentally ill may indeed be "sick" (a term with a huge amount of complexity in its own right), but we are not on any given day A) sick or B) not sick. These conditions can be lifelong or last many years, going through flares and remissions. But we are not just "sick", we are people with hobbies, partners, friends, and if possible, jobs. Our illness(es) may feel all encompassing at times, but they are not us. They are only a part of us - people who are just as complex and nuanced as any. And yet, it seems at times that there are absurd standards, perceptions, and expectations about what someone who is "sick" looks like. This only exacerbates our already complicated relationships with our bodies.

Most of you regular readers can skip this post unless you're just curious - it's time for another update on my throat issues. I know there are tons of people out there struggling with LPR (hello!) and they seem to find their way to my blog in numbers that are pretty astonishing, so I wanted to share what's been going on lately. If you want to read further into my experiences with this, the next most recent post was at the end of 2013 and is here, and my first post from the start of 2013 is here.

It's taken me a whole year to get this issue done... I've been kind of preoccupied, ironically, dealing with my health and wellbeing! Slowly, but surely, I've been working away at it, and after a little stapling party, it's done!

Most of my usual blog readers can probably skip this post - it's an update about one of my health conditions that will probably be totally boring to most of you, but many of us who are dealing with this tricky condition have found it helpful to share our experiences.

I had a really interesting evening tonight. I ended up deciding kind of last minute to head over to Lunapads HQ for one of their "Lunacircle" gatherings, it was the first one I made it to so I wasn't entirely sure what to expect... The topic of the night was doulas and women's bodies in times of transition, and the conversation was led by two doulas - Danika and Andrea - from Fig Birth Services. And before anyone gets ahead of themselves, no I am not pregnant, I was just curious to go listen and learn (and it turned out to be pretty split between pregnant women or women who already have children, and those who haven't had kids or don't even plan to, which I thought was really cool!).

I found this book - "Are You Tired and Wired?" by Nurse Practitioner Marcelle Pick in a bookstore last winter, and little did I know how much it was going to mean to me. I'd been diagnosed with adrenal fatigue, so when I saw it I thought it might help me understand further what it is and how it works, and what else I could do to help recover from it. It ended up reading like my life story in parts, and blowing my mind as far as how long this has probably been building up. It validated so much of what I'm going through, and helped me understand how important what I've been doing is.

You may think this is irrelevant to you, but ask yourself if you or someone in your life is constantly exhausted and on edge. Can't get to sleep (or wakes up in the middle of the night or too early) despite being exhausted. Feels like total crap after exercising, even though exercise is "supposed to" make you feel more energized. Is completely reliant on caffeine or sugar to get through the day. Having extreme cravings for sugar, carbs, and/or salt. Runs like an energizer bunny until a certain point, then crashes and turns into a puddle. Feels anxious or depressed and like life is no longer manageable.

This building is part of VGH, you wouldn't know how pretty it is from the outside. Sitting there, it was hard not to notice I was the youngest person for miles around who didn't actually work there. I was there to get a second opinion on my laryngeal granuloma.